About Me

Hello and welcome to my blog. I'm no expert on hyperlexia but I have learned more than I ever wanted to know about this disorder over the last few years. My son Will, who is now 5, has this disorder and my research has revealed so little information that I felt compelled to generate a current source for parents who are just learning about hyperlexia for the first time as well as providing a place for those with a diagnosis of hyperlexia to gather. In the months since I started this blog I have found many other moms who are also sharing their experiences. Visit the blog roll to visit their blogs and learn about their amazing stories too. Please contribute.. it's easy! Just click on the comments link at the bottom of a post and share your own experiences.
Thanks again! =)

Wednesday, February 9, 2011

William is using his words consistently now, albeit still with great difficulty. We finally got him in front of a psychiatrist specializing in children with autism. Given Will's particular set of behaviors we agreed that a sedative (in this case Tenex) would likely be of the most benefit to him. After 2 weeks on it he had improved in some areas, but had become unacceptably emotional and withdrawn.

The next appointment had him on Adderall. We were warned with this transition that he might become more emotional, however, as he adjusted to the medication he became VIOLENTLY emotional. It became more and more difficult to get him to do the simple things that he hadn't really had any problem with before.. like getting ready for school. He also lost weight over the 2 week period, and this is a child that, due to his picky eating, didn't have much weight he could afford to lose in the first place.

He finally got to the point on Friday where we just could not get him to cooperate and he went without the medication. Friday was a "difficult" day for him at school, according to the report in his communication log. Saturday was worse and he refused to eat anything in the morning so he didn't get his dose that day either. His violent outbursts were downright scary. However.. as the day wore on he ate and calmed down. He spoke his requests wonderfully. He played, calmly, with his brother and sister. He did not hyper-focus on playing his complex computer games. He was likely the most "normal" I've ever known him to be.

The human brain is still a mystery. The experts have determined that the part of the brain that is responsible for controlling fever is also associated with autism behaviors. This was virtually unknown when I began writing this journal three years ago, despite countless care givers (including myself) having noted a correlation between fever and autism behaviors. As a sidebar, I'm really disappointed that there isn't more out there on this connection. The best I could find was this recent article, but it's just a rehash of what was being "announced" almost two years ago in April of 2009. I hope they're working on it.. because these two medications don't look like they're going to help my little boy one bit.

However, the processes his brain had to go through in adjusting to not only one but two rather powerful medications seems to have had a long term effect. He IS more stable. He IS more talkative. He is focusing well on his tasks. But not because of him being ON the medications. He seems to have experienced some perspectives in that wild roller coaster ride that have helped him now that he's OFF the medications. (Please.. it would be totally inappropriate for you to consider taking your child off of medications that are helping him/her without talking to your child's doctor first.)

Only time will tell if these changes prove to be lasting.. but for now.. he's a happy and content little boy who's eating everything in sight. =)

Friday, May 15, 2009

With the arrival of warmer spring weather we're faced with the same issues we have every summer. Whereas the cold weather makes William want to do nothing but stay indoors where it's warm, the warm weather makes him want to do nothing but stay outdoors where it's lovely. I can't blame him, I rather enjoy it too. But life being what it is it's just not possible for me to spend from 4:00 to 9:00 outside watching him. I have things I need to tend to in the house. And this evening when the time came for him to come inside and have dinner he protested like he usually does.. with screaming. I got him fed and plenty to drink. I got him changed for bed and although the screaming had diminished a bit he was still obviously upset. No amount of asking what he wanted would result in a response other than screaming. Dad mentioned that he had run into a similar situation recently and had asked him to "use his words" to tell him what he wanted. William answered that he wanted the bike inside. It had been left out on the porch and he wanted it back in the house. Such an easy thing to solve.. and yet such a hard thing for him to convey. So with that suggestion I went to William tonight and asked him to use his words to tell me what he wanted. He thought for a moment and very quietly answered. He said it so quietly, so tentatively, that I couldn't quite make it out. It wasn't "bike inside".. it was short.. only one syllable. I asked him to tell me again and strained to listen. I shushed his little brother so I might have a chance at catching it.. I begged him to say it AGAIN. He did. The words he said were shocking. He said.. "I want love please." I cried as I held him as he drifted off to sleep.

Monday, November 3, 2008

Wow.. two months since I posted! I have whole chapters to write! Since my last posting we've moved across the country and found a fabulous new life waiting for our family. William is settling into his new school very well.. the shake up may have thwarted advancement.. but it was only temporary! He is verbalizing requests and working so hard on helping us to understand what his needs and wants are. We are all so excited for the progress he is making. I can't even begin to imagine what the near future holds. Stay tuned!

Tuesday, September 9, 2008

Will is beside himself with anticipation that the start to the school year for him is very near. He's not too happy right now though as his big sister is already getting to ride the bus and participate in all the amazing things that go on there. You see.. the preschool system here starts later.. and it's been hard for him to accept. That coupled with the cooler temperatures and last summer visits from friends he doesn't usually get to see have him antsy.. and me too.

I'm excited for him and all he will learn this upcoming year. Big changes at the school too.. he'll be back with one of the teachers that were in the group that were the first to introduce him to the structure of school.. so there's that familiarity to guide him. But for now he's certainly had enough of this summer loafing.. and it's high time to get back into his routines.

Saturday, August 16, 2008

"It's William!" was his response when he saw himself in a picture just a few moments ago. Wow.

Test..

Me: "Who is that?" Will: "It's Mommy."

Wow.

Another test..

Me: "Who is that?"Will: "It's Sara."

Four years, 10 months, and 19 days to answer a W question. Written words cannot convey the enthusiasm and praise these responses produced. Huge progress this summer. I can't wait to see how he progresses over the upcoming school year.

Sunday, August 10, 2008

The other day Will pulled my glasses off my face and put them on his own. He squinted as he tried to make sense of the altered images now focusing on his own retinas. I couldn't help but wonder if they were helping him. We've already learned his big sister has some visual deficiencies.. so logic would dictate William certainly might as well. But then I got to thinking about how on earth could we ever determine which prescription would be the best ones to correct his vision. It wouldn't be possible to get him to respond to the typical barrage of questions the optometrist would throw at him.. so how indeed?

It occurred to me that he could do it all on his own. He's so capable in so many ways other than verbal communication and it doesn't take him long to pick up on the idea behind a new task. I thought perhaps we could just put him in front of a table with various lenses on it and he'd try them all out, selecting the proper ones.. then properly use the provided tools to assemble them into the frame.. put them on and then walk out the door as if nothing even remotely unusual had just transpired.

Now to find an optometrist willing to give a four year old his tray of lenses to play with.. hmmmm.......